Supporting Siblings of Terminally Ill Children

by Rainbow Trust Children's Charity
Vetted

13 year old Iona and ten year old Cameron have a little brother, James, who was born with a number of health and medical issues. Having a brother who is so unwell, has been very hard for Cameron. “It’s not like most of my friends who can go places, we can’t and when he is sick it’s really worrying, will he be OK?”

Iona helps her mum take care of James and for Iona, “I’ve got used to it now, we can’t do the same things that our friends do.” Iona would like more time with her mum, Keeley, but understands that she needs to care for James.

Rainbow Trust Family Support Worker Jayne helps out by taking Keeley and James to hospital appointments or by looking after Cameron and Iona. This allows the children to continue with their usual day despite having the worry of their little brother being in hospital. Jayne takes them to places that they can’t go with their mum and James, like the beach, the cinema or ice skating. Rainbow Trust also runs a number of sibling groups where siblings of sick children spend time together with children having similar experiences. Like all of us, being with people in similar circumstances helps us to feel more normal. At these groups, Iona says, “we talk about general stuff and about how other people manage having a sick sibling. They understand what it’s like for us.”

Keeley knows that both Cameron and Iona can talk to Jayne about things that they might not feel comfortable talking to her about for fear of upsetting her. They will tell Jayne when they are feeling worried or scared. Both children appreciate how much it has helped having Jayne to talk to, “It makes you feel better,” says Iona.

Without the groups, Iona thinks she’d feel, “more alone and nobody would understand what it’s like for us,” and with Jayne’s support, they can have some fun. “Sometimes we feel guilty for having fun but we can have fun with Jayne. It’d be really hard without Jayne and the groups.”

“Definitely choose Rainbow Trust,” says Cameron, “It’s more than just taking us to places we can’t go with mum, it lets us do kids’ stuff.”

“They are very thoughtful children and having James has made them more understanding and nicer children. Their life is not always ideal, but they have good life, they are well loved,” says mum. Cameron quickly adds “yeah, we are.”

Rainbow Trust would like to recruit and train more Sibling Support Workers like Jayne. Thank you for giving your support through Global Giving. 

Dawn and Louis in the park
Dawn and Louis in the park

Having twins is a handful but having one that is unwell is even harder. Spreading and sharing your time becomes your priority while trying to tend to your unwell child. Simple things like bathing your new babies and their brother can be terribly stressful.

My son Charlie was born last year with an as-yet undiagnosed condition. Sadly he was too unwell to come out of hospital for Christmas so I left a stocking on the end of his cot on Christmas Eve and went home to be with my husband, Charlie’s twin brother Louis and older brother Jacob. I did all the bits with Jacob like putting food out for Santa and the next day we went back to the hospital to be with Charlie. It wasn’t the Christmas I’d planned, but at least we were together for part of the day.

Just before we were discharged from hospital in February this year, our Community Nurse recommended Rainbow Trust. I knew we’d need as much help as possible when we went home so I agreed. Dawn, one of Rainbow Trust’s Southampton Family Support Workers, came to see us and did an assessment. I really liked her and felt we would get on with her. She visited us three times a week, which took that pressure off of me just having someone else there to help. She’s like having a big sister, she just slots in – I don’t feel like she’s a visitor, she just gets on with it and I trust her, I trust her with my children and especially Charlie who has such special needs.

Dawn spends time with Jacob, giving him one to one time so that he feels special again. She’s also taken him for days out with other children, which has been great for him. Jacob can talk to Dawn about anything that’s bothering him and he knows that she is there for him. That makes such a huge difference to me – it’s been hard for him. When I was rushing around doing things, he told me, “Mummy you don’t listen to me anymore,” and he’s got a valid point. Having Dawn means he has someone special who does listen to him.

She's been amazing. Things would have been so much harder without her. She takes care of Jacob and Louis while I feed or bath Charlie. She also helps out when I have hospital appointments with Charlie. She’ll collect Jacob from school and look after him and Louis so I don’t have to worry about entertaining three children while I speak to doctors about Charlie.

I am really excited about Christmas this year, the idea of having us all together is magical for me. We are going to make a big thing of it as last year just didn’t feel like Christmas. But this year will be special, having all three boys with us at home.

Dawn’s help is like a lifeline, just having someone else to turn to, to talk to and to help with all the little things makes a huge difference to my family.  I’d definitely recommend Rainbow Trust to other people in a similar situation, I trust Dawn with my family and I wouldn’t want to be without her.

Thank you for making it possible for Rainbow Trust to make a difference to families like mine. 

Phoebe and I
Phoebe and I

When Phoebe was 14 months old, I noticed a rash on the back of her legs. Over the next few weeks Phoebe was admitted to hospital for various infections before a consultant sat us down and told us that Phoebe had leukaemia. Our whole world came crashing down.

The following day she was sent to the oncology ward where she spent the next two months as she was so poorly. My husband couldn’t go back to work as we had our three year old son, Ollie, to take care of. We tried to keep things normal for him so we took him to school but I couldn’t spend the time with him as I just wanted to be with Phoebe in the hospital. Nathan, my husband, would stay with him at home and I’d stay in the hospital with Phoebe. When I needed sleep, I’d come home and Nathan would stay in the hospital with Phoebe.

Our nurse put us onto Rainbow Trust Children's Charity – she could see we were struggling with being in the hospital and looking after Ollie. Nathan had to go back to work so it was hard.

We were introduced to Rainbow Trust Family Support Worker, Amelia - I was so happy for the help. Ollie goes to nursery two days a week so on the days he’s home, it’s a struggle. I felt like I was pushing him out which I hated but I needed to be with Phoebe. Everything was about Phoebe. Ollie would cry a lot and when he didn’t get his way, he’d kick off. I didn’t know what to do for the best so when we were referred to Rainbow Trust, I was so relieved.

Ollie was only three and he didn’t understand the situation so Amelia particularly dedicated quality time to playing with him. They got on the minute they met. He still gets so excited when I tell him she’s coming. It’s such a weight off my shoulders knowing there is someone looking after my little boy so that I can be with my sick child. Ollie loves Amelia and I think nothing of leaving her a key to collect him from school and take him home to play and then she brings him up to the hospital so he doesn’t have to be there too long.

He’s much happier now, he’s more confident and he’s more settled. Having someone there just for him has made a big difference. He can talk to Amelia and he can play with her when I am not around. She is there for him. Having someone there who you can trust with your child is amazing, I don’t know what we’d do without Amelia now. She’s just brilliant. If I know Phoebe has an appointment next week, I know I can call Amelia and ask her to fetch Ollie from school and that is such a relief for me.

Rainbow Trust take care of you and your family, not just Phoebe but Ollie and me as well. Amelia is just brilliant but I think more people need to know about Rainbow Trust. I didn’t know about them before Phoebe got sick. Amelia is just wonderful; we couldn’t do without her now. 

Lily-Rose plays with Shirley (Southern Daily Echo)
Lily-Rose plays with Shirley (Southern Daily Echo)

As my son was dying, I needed help to support his three-year-old sister...

Baktash was eight years old when he was diagnosed with a brain tumour. Baktash had radiotherapy, as his mum, Zakia, recalls, “They told me that as long as the tumour didn’t grow he would lead a normal life”.

Six years passed and with Baktash doing well, Zakia had a daughter, Lily-Rose. However, one day Baktash had an operation on a second tumour and was rushed back to hospital soon afterwards. Zakia remembers the day vividly. “He had a CT scan and at 1am the doctor came and simply said, ‘His tumour is really bad, he’s going to die’. I was on my own with Baktash all night and I just cried.”

Zakia remembers the impact on her family. “At the time I just wanted to spend as much precious time as I could with Baktash, I wasn’t able to focus on Lily. She was struggling as I wasn’t able to do anything with her.”

Zakia was referred to Rainbow Trust Family Support Worker, Shirley. “Lily was much happier after Shirley started. Before that her life consisted of hospitals or being stuck at home. Shirley took her to places like Rainbow Trust’s Treasure Chest play room; she’s so happy when she knows she’s going there.”

Shirley was also able to help Lily cope with Baktash’s illness. This relationship proved especially important, when Baktash died. Zakia says, “I couldn’t leave Baktash alone, but Lily was upset, so I called Shirley”. When Shirley arrived the family asked her to speak with Lily and explain to her what had happened, since they had such a strong bond.

Shirley still takes Lily to places like the Treasure Chest. She is also there for Zakia when she needs to talk about Baktash, and she will be there for the whole family, for as long as they need her. 

Rowan and Petra
Rowan and Petra

Petra’s sister, Rowan, was diagnosed with a brain tumour five years ago.  She has undergone years of treatment and her big sister, Petra, has been by her side all the way.

Petra, like most eleven year olds, just wants a “normal” family. She wants to be able to go to the park with her sister or play hide and seek but can’t as Rowan is visually impaired, a side effect of the tumour. “It makes me sad because we can’t do things like walk to the park,” says Petra.

In October of last year, Rowan got septicaemia and was in hospital for a few weeks. Beth, the girls’ mum, had to be in the hospital with Rowan. It was Petra’s birthday and she and her brother were looked after by a number of friends and family members. “It was annoying not having the perfect birthday, having all my family together,” says Petra.

Janet, one of our Family Support Workers, takes Beth and Rowan to hospital appointments which means that Petra’s dad can take her and her brother to school. With Janet’s help, Petra doesn’t have to go to the hospital with her sister any more. She can continue with her own life and all she likes to do.

Janet’s help allows the rest of the family to continue with their usual routines as much as possible and the Family Support Workers’ support is aimed at normalizing life for these families who find themselves in a “new normal.” Rainbow Trust is acutely aware of the impact that a sick child has on his or her siblings and Family Support Workers do as much as they can to support siblings.

Beth and Will organised for Petra to have some counselling to help her through her difficulties with Rowan’s illness but she didn’t feel that the counsellor understood her so did not continue. Our Family Support Workers do understand and can help, they have seen so many siblings struggling and have found ways to help siblings cope and sibling support has become a big part of our service.

While this extra-ordinary young girl watches the world go by wishing her family life was as ordinary as her friends, she would like to tell other siblings in her situation, “Don’t hide away, don’t bottle it up, if you find it awkward talking, write a diary or talk to cuddly toys, tell somebody so you don’t feel constantly upset.”

 

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Organization Information

Rainbow Trust Children's Charity

Location: Leatherhead, Surrey - United Kingdom
Website: http:/​/​www.rainbowtrust.org.uk
Project Leader:
Jenny-Anne Dexter
Leatherhead, Surrey United Kingdom
$23,805 raised of $30,000 goal
 
414 donations
$6,195 to go
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